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Even with good insurance, health conditions put great burden on families

Greg Murphy had a gastrointestinal tumor, called a sarcoma cancer, removed at the Mayo Clinic and is going to be on a chemotherapy regiment for three to five years. His wife, Barb, and sons Zachary, center, and Jacob share a laugh with him at home in Grand Forks, N.D., recently. Eric Hylden / Forum News Service1 / 2

That's the question Greg Murphy hears multiple times a day from his wife, Barb, two sons and any other friend or relative who stops by his Grand Forks home.

The pill in question is a chemotherapy pill. Greg Murphy has been taking one every day for the past year since undergoing surgery to remove a large, cancerous tumor from his gastrointestinal tract. He'll be on the pills for the next three to five years as a precautionary measure to keep his rare form of cancer at bay.

The prescription costs $19,000 per month.

Greg is lucky. He has good health insurance through his job at the North Dakota Mill and a large, supportive family nearby to help. But the costs of a catastrophic condition can still be a significant burden on a typical family here and across America.

For people like Murphy and even those facing less dire diagnoses, navigating systems of insurance coverage, costs and medical bureaucracy can be as harrowing as the disease, even for the well-insured. For many, a catastrophic condition is a crash course in the strengths and failures of our systems of treatment and coverage.

Cost of care

This year, 36,100 North Dakotans and 282,700 Minnesotans were among the 15.8 million Americans dealing with cancer, according to data from the Centers for Disease Control and Prevention and the National Cancer Institute. Many of those people will be fighting not only to get healthy, but to stay financially afloat.

A study from the Duke Cancer Institute published in August found one-third of insured cancer patients end up paying higher out-of-pocket costs than anticipated and 16 percent of insured cancer patients report feeling overwhelming financial distress.

"What we found was that basically a cancer diagnosis makes you underinsured," said Dr. Fumiko Chino, a resident in radiation oncology at Duke who co-authored the study.

Chino said for most people a cancer diagnosis can be financially daunting even with the best private insurance. Her study of 300 insured cancer patients who received cancer care at Duke found the average patient was spending 11 percent of household income for out-of-pocket costs. Anyone paying 10 percent of household income on out-of-pocket health costs is technically considered underinsured, she said.

"There's this idea that private insurance might be better and that it might insulate you from higher out-of-pocket costs, but we actually found that Medicare was actually the best thing, in terms of people's costs," Chino said.

A long road back

Murphy's gastrointestinal stromal tumor snuck up on him. One day last May, he was at work and felt off, "like I was going to faint, but I never did."

He was taken to the emergency room, where his hemoglobin was down to just 6.1 grams per deciliter. Doctors did a blood transfusion to get his levels stable, but couldn't bring the hemoglobin back to healthy levels around 14 grams per deciliter. A barrage of tests was performed. One day, a doctor felt a hard lump in Greg's lower abdomen, and asked him to get a CAT scan.

What they found was an tumor in his gastrointestinal tract. Greg was sent to the Mayo Clinic in Rochester, Minn., where on July 17, 2016, he was diagnosed with cancer.

After an August 2016 surgery that removed the 11-centimeter tumor, which had wrapped around his colon, bladder and small intestine — about 3 feet of which was also removed — Greg missed five months of work at the State Mill. He used up his sick leave and vacation days before being placed on a fixed reduced salary of about 70 percent of his wages.

Everyone handled it differently. Youngest son Jacob rarely let his father out of his sight. Oldest son Zachary began to weep after a football game in Jamestown last fall, the first game his father ever missed. Barb's sister came to stay with them for two weeks after Greg's surgery, becoming "Mom 2" for the kids.

"They kept a positive attitude throughout the whole thing," Greg said of his family.

Friends and neighbors would bring by large plates of food or gift cards to Papa Murphy's. Both Greg and Barb's parents live in town and helped a bunch.

But the bills don't stop.

"Five months caught up," Barb said.

The Mayo Clinic sent their hospital bills to collection agencies within a month, Barb said.

"If we didn't have the insurance we have I don't know how we could have managed," she said. Every time the family goes to Mayo for a check-up, which had been every three months but is now every six months, it costs about $1,000 for travel, lodging and food for everyone.

The hospital costs alone come to about $4,000 each time, and the Murphys owe about $1,000 in co-insurance for each stay. Between the hospital stays and chemo pills, they hit their maximum out-of-pocket costs fast.

The family started to cut back. Their son Zachary, a senior hockey and football player at Grand Forks Central, didn't play fall hockey this year to save money.

"We do all we can just to keep our heads above water," Barb said.

Eventually, Greg's sister-in-law Becky made a GoFundMe page for the family, which has raised about $14,000 in 15 months to help them pay off bills and for travel expenses for receiving treatments.

"It made a huge difference at the beginning," Barb said. "It really kept us afloat."

The majority of GoFundMe accounts in Grand Forks are related to medical costs. In 2016, GoFundMe said $930 million of the $2 billion raised from the crowdfunding site was for medical campaigns.

"Increasingly we're in a world where GoFundMe is a type of supplementary insurance and it's a tragedy," Chino said.

Her study also explored financial toxicity, the concept that high costs associated with cancer care can exacerbate symptoms.

"It can actually affect the quality of your care," Chino said. "Meaning that you're not getting the medications you should because you can't afford them, or you're not getting the scans you should because you can't afford them."

Often, patients may skip treatments to keep their jobs or provide for loved ones.

"Ultimately we care about quality of life, and we want to make sure essentially that people receive the care they need to save their life or extend their life," Chino said. "Not all cancers are curable, but it doesn't mean it should bankrupt your family."

The Murphys say they've had a hell of a year, but they're optimistic about the future.

Greg has been back to work for about a year. Barb started a new job about nine months ago at MAK Construction, which she said has been very accommodating to any health-related issues.

Greg says he's finally adjusted to the drain the chemo pills take on his body and has regained most of his energy. Things are starting to go back to normal.

"It's a life-changing thing, but we try not to let it affect what we want to do," Barb said.